Space and the Great Outdoors

I love this time of year, especially when the sun shines, the sky is blue and we can all be outside together. The last few weekends have provided us with the most perfect Autumn weather and so we have managed to enjoy some much needed family time.  We have been able to get out, explore, gather Autumn fruits and have made some great bonfires; C’s perfect days!  During this time I have watched C and seen how his moods have changed.  From pretty stressed and close to the edge to relaxed and chilled; well as much as a child who has ASD ever is relaxed.  Over the last couple of weeks it has occurred to me quite how much the surrounding environment can affect C’s mood and in turn us as a family. A happy C results in a happy family.

So just how important is space and the great outdoors to a child with autism?

To be honest, I have no idea! But I’d love to find out.  Right now however I only have experience with C, but I am fascinated by how much environmental factors can effect him.  As with any parent affected by autism, I am always on the look out for ways to improve things not only for C but for all of us.

So why does space have the effect it appears to have?

We are extremely lucky and although we do not live in the countryside, my parents farm.  We live less than 5 miles away from them so we do have access to the most amazing outdoor space.  This is something I become more and more grateful for, each and every day.  I am convinced that C becomes so much more content when there.  After having a week at school, caged in, surrounded by noise, people, pressures and other endless stresses that a child with autism has to deal with; being able to escape all this must be such a relief. We all need to chill out and let ourselves recover after a stressful day but living in the stressful world, being crushed by anxiety everyday, all day must be so exhausting.   No wonder peace, quiet and space is craved.

C just loves disappearing into the trees and bushes.  Exploring what’s around the next corner.  Paddling in the scream, even in the freezing cold.  Collecting sticks, feathers, stones or whatever is the favorite item of the moment to add to his latest collection.  Disappearing into his own little world, talking to himself for hours, just letting the worries that seem to weigh so heavily on his little shoulders drift away.

I am so convinced that peace, quiet and space is that important to him that if we could I would move house tomorrow, so we could live in the middle of nowhere.

But it’s not just the outdoor space that is so important.  I think when noise, lights, hustle and general bustle of everyday can effect a person so much, of course they are going to need space and quiet.  They need this just to be able to unwind at the end of each day.  I can watch C’s behaviour deteriorate over not a massively large time frame when surrounded by lots of people, noise, bright lights etc.  Be this when on a visit to family, a day at school, or a family day out.

We can quite often be shut out of the sitting room at home by C when he has reached his overload point.  He will lock himself in, turn the lights off and close the curtains.  He needs to sit in the dark, he needs time to recover, and during this time he wants to be left alone.

I often wonder if this is one of the biggest failings of schools, and something that actually they could so easily put right.  Children just sometimes need quiet and space to recover and recharge.  They need to be allowed to go to a quiet corner away from everyone.  If more schools could just understand that a few 10 minute time outs, away from the classroom pressures and playtime madness, children would function so much better and their behaviour would improve.  Not only would the child be so much happier, the teachers would have an easier classroom and parents might not have a child quite so on the edge at pickup time!!

I realize its really hard to provide children, who have no idea of danger, space and alone time.  Its a very risky business.  I am always torn when it comes to this, even at home.  C will just disappear in a blink of an eye and to make matters worse, you can call him until you are blue in the face, completely freaked out because you think he’s run off (again) only for him to be 2 meters away, and, as usual just not answering.  But then does he just disappear because without realizing it, he is looking for space and alone time?  Its just finding that balance which is so hard to do.  You need to know where they are.  You need to be able to see them or at least hear them otherwise you’d become even more crazy with the stress of not knowing, and the very real fact that you might lose them and something bad happens.

In the past we have lost C a number of times at the farm.  To be honest so many times, I have lost count.  He was only 3 when he first worked out how to unlock the backdoor using an umbrella.  I mean really, he was 3 and boy did I freak out!  Its an old farmhouse so there is more than one door to the outside.  We can hide keys, put the blots on, but when he decides to go, he just does.  We have found him on the tractor, in the farm truck, in the stream (with no clothes on), in the barns, at the top of massive wood stacks.  You name a place where you don’t want your child, autistic or not, to be found, we have found C there!  C from a very young age has just loved to be on his own!  At least the advance of living in a new build is we can lock him in at our house, but even then we have lost him a number of times and spent a small fortune on window locks and garden fencing.  It never ceases to amaze me how a child who normally makes so much noise can vanish and then doesn’t make a squeak!!

So the answer…. I am not entirely sure but C needs space and somehow as a family we need to find the right balance to provide him with this and in the best, safest possible way.


Dear Parent

The last couple of weeks have been pretty rough for us all, well really for C but as always we have just gone along for the ride.  Starting the new school year has been tricky for both C and myself.  The move to a bigger class, a new classroom and a new teacher has been really hard.  It has been horrid for me to watch him struggle and suffer and as always never really knowing what I can do, to make it that bit easier for him.

As I have said before, I worry a lot about him being at school.  I find it extremely hard to let him go, knowing that I am not there to protect him from everything.  I have to trust the staff to do all this for me.  But I also worry so much about him being judged by others.  How much do people really understand?  Do his class mates get cross at him because he can’t sit still?  Do they get annoyed that he has zero volume control?  Do they get upset when he pushes them in the queue?  And my worst fear; is he getting left on his own at playtime as no one want to play with a little boy who can be so demanding and bossy!  Do the children all go home and complain about him to their parents?  And, if so what do they say?  I’d really hope they try and explain why he does these things and that he doesn’t mean to.  But do they actually understand themselves?  Are they in a place to explain?

All parents of autistic children want understanding and acceptance but for this to happen we first surely need others to have the knowledge about autism.  I have never told anyone at school that C is autistic and school can’t say anything.  So how can I expect them not to think C is just naughty?  One the main reasons for writing my blog was to try and get others to understand a little more about autism.  If people don’t explain about it, how can we ever expect people who have never lived with it, to get it?

So after being inspired by another mother the other day I thought I would write a letter to all parents at C’s school to try and help them understand and hopefully put them in a better position to explain to their children a little more about ASD.  Whether I actually ever have the courage to hand it out is another matter but here it is….

Dear parent

My name is Lottie and I am the proud mummy of two little mini-beasts C & G.  I realize that this isn’t the normal things that mums do, but I just wanted to write a short letter to everyone in the school to try and explain a little about autism because C is autistic.  Some of you many already know lots and others may know very little.  Before I go on, please don’t think I am being patronizing or condescending to any one of you!!

Autism is one of the top hidden disabilities and therefore can be very hard to spot.  People who have it look completely ‘normal’!  You will have all heard about it but most of you will not have been directly affected by it.

Every parent wants their child to be accepted by their class mates.  They want their child to enjoy school and make friends.  They want their child to be happy!  As a mother one of my biggest fears is that C ends up hating school.  One in 5 children who are autistic ends up getting home schooled because they cannot cope with the school environment.  I think this is extremely sad because school can be a super place, but I can also see how it happens.  There is a scarily high rate of bullying of autistic children.  This I am sure is mainly because other children don’t understand why said child behaves how they do.  Again I really can see how easily this can happen.  And I think this is why I have taken this step and written this letter.  No one can understand, and they shouldn’t be expected to get it, if they don’t have the knowledge about something in the first place.  One of the things most autistic people and parents of autistic children bang on about all the time is acceptance.  But it occurred to me the other night that how can we expect this if people, for 1. don’t know and 2. don’t understand.

Children who are autistic want to join in, they want to play, they want to learn.  But they just need a little bit more help and support.  Many autistic children have sensory issues which means they can seem rough during play, pushy in the lunch queue, they can be massively affected by big spaces, loud noises, bright lights and they can have no volume control so seem to shout.  They can have extremely high anxiety levels which means they need to be in control the whole time, which pretty much always comes across as extremely bossy and demanding.  They are very visual learners, so they often need to see something before they understand.  But because they are so visual, their brains are taking in so much information they can very easily become overloaded.  Their language skills can often seem very advanced but actually they cannot process lots of information at once, which means they need things explaining in as few words as possible.  Because it takes time to process, they can seem rude or as if they are not listening; count to 15 before you repeat.  Change can be extremely hard.  They need a fixed routine.  They need a lot of warning before something happens.  Transitioning between one activity to another can be super tricky.

When children get overloaded they very often have meltdowns.  These can seem like tantrums from the outside but are anything but.  Its when they have become so overloaded by what is going on around them they cannot cope anymore  They need to be seen and handled as a panic attack and not a stroppy child who has not got their own way.  As a parent I find these extremely hard as they are uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me.  Never-mind the fact that if they happen out in public you are judged and thought of as a bad parent.

C is just like any other 5 year old.  He so wants his friends around to play, he wants to go around to other peoples houses and play.  He wants to go to the park, he wants to go to birthday parties.  He wants the same as all children.  But these simple activities can have a massive impact on him and us as a family.  For example, to go to a birthday party can take a whole week of preparation.  He needs to know who will be there, where it will be, what will happen.  And then once we arrive it can take him ages to find the courage to walk in.  The noise can be completely overwhelming.  The excitement can be uncontrollable.  He can manage about an hour before he stops listening to me, starts running around at 100mph, goes bright red and starts to sweat.  Now its time to leave and get home, asap.  He is now showing all the signs he is seriously overloaded; a meltdown is brewing.  But by this point he can be too close to the meltdown for me to be able to get him to leave without pushing him over the edge.  The line is so fine.  Because he is only 5, he is still too young to fully read the signs himself so as a parent I need to do this for him. I also need to help him learn how to manage himself.  When it is time to leave?  When it is time to go and quite literally sit in a dark room?

He is already beginning to feel these signs but is still too young to get it, so he doesn’t react in the safest possible way.  A lot of autistic children are runners, and added to the fact that many also have no sense of danger it can be a pretty stressful mix.  When things get to much he can quite often just take off.  This is why if I am talking to you in the playground and seem I am only half listening, its because I am watching the classroom door.  I may seem crazy and rude but if I don’t grab C as he comes out of the classroom, he will be off.  Most of the time he will go back to the car and get in it, but if he is already zoned out, he will just run straight past.  Cars and roads will not stop him!

So please don’t think C is bad, naughty or rude.  I don’t want you to think I am after people to ask C over to play, or expect him to be asked to every party.  I would love to have his friends over to play and give him birthday partied but right now, I am honestly not sure he or I could handle it.  He is doing really well at school and that has a lot to do with the super staff and lovely children.  I am not ever after sympathy for either him or me, only ever understanding!

Thank you for taking the time to read this from a proud but as ever worried mother.

A moment of honestly

As with so many other mummy’s who blog, I am torn whether to share this.  But I’m having a little bit of a low moment and I know I am not alone feeling like this, so I am going to spill from the heart for just a few minutes.

I truly love my boys, all three of them, so very much.  T and I met on day one of university and we have kind of been together ever since.  Uni friends may slightly disagree with this but that’s a whole different story and defiantly not one for this blog!

As everyone does, we had our dreams and plans.  We wanted a house of our own, successful careers that we both loved, a family of our own and a dog.  I defiantly wanted a family and sooner than T.  I certainly put the pressure on him and in the end he caved and we has C.  We both new life would change and that it never be the same again but neither of us had a clue quite how much things would change.

C was not an easy baby.  I am not even sure I could tell you why he was so hard.  As although only 5 years ago, after not having a full nights sleep since being about 7 months pregnant, my brain seems not to process quite as well as it once did.  Over the past few years during numerous appointments with doctors I have been asked about C’s development.  Was he late at doing this, did he do that, when did he starting doing this.  I have no idea.  This is not helpful in the assessment process.  But as a parent you learn to survive and just get on with things.  You get up, do what needs doing, remember, well sometimes remember what needs remembering and then you go to bed, and then do it all again tomorrow.  Fighting the many battles that get thrown your direction on the way.  Neither T and I planned this, no one dreams of this.  I think most people will think maybe the first 6 months of being a parent will be tough, even the first year but then it starts getting easier.  This is why we ended up having G two and half years after C as I new that if we didn’t, we might never have another baby.  I am so, so glad that we made that decision because I was right.  If we had left it another 6 months we would not have had another one!  This would have been a dreadful mistake!! It was a hard decision to make but absolutely the right one.  Although G is a little whirlwind we wouldn’t change that.  G is amazing with C. He still doesn’t always get when to get out the way, but he’s only 2.  I know he will always protect his big brother and be there keeping a close eye on him, and that is something ever parent wants for their children.

I look at other parents and I do have that horrid feeling of jealousy.  I hate that I do, and I get so cross at myself about it but I would be lying if I said I didn’t.  I would love to all be able to go out for lunch and get a pizza.  I would love to be able to take both boys swimming at the weekend, I would love to be able to have a day out at somewhere like Legoland.  I’d love to have friends over for lunch, even have C’s friends over to play.  But we can’t, it just does not work for this family.  This weekend we have not even managed to leave the house as a family and go to my parents, which is a whole 10 minutes down the road and C’s favourite place.  T and G have gone on their own, cross and sad that we aren’t all together, and I am at home with C who is watching the same programme over and over again on the Ipad.  I am feeling close to tears worrying about how everyone is coping or rather not coping with the day to day life of living with autism.  This family stuff is a whole lot harder than I ever imagined!

I often wonder if I would change anything.  Its a really hard question to answer.  I have read time and time again, parents saying they wouldn’t change a thing because that would mean changing their child.  This is why its such a hard question.  I completely love C but i don’t love autism.  We do have some amazing moments and I never take anything for granted.  I am still learning to live in the moment as I think it would help me stop worrying about what is waiting to jump out at me around the next corner, and to be honest I am not sure I will ever learn this, but I do keep trying.  Without question my marriage is stronger than it ever has been, and I know this because of the untold pressure T and I have been put under and yet we are still together.  We do still really struggle with things but we do a pretty good job of regrouping each evening when we are aloud.  This is something we have learnt is a must.  Having a child who still insists on sleeping in your bed the moment they wake up, which is any time from midnight and neither of us having managed a night away together without the children since C was born; trying to make time for each other is essential.  So back to that controversial question; would I change anything, the honest truth is yes.

I see on a daily basis how much C is affected.  I see him wanting to play with friends but needing to be so in control that people don’t really want to play with him.  I hate how he is judged by his behaviour that he cannot control.  I hate how its not safe to take your eyes off him for a second the minute we leave the house, so we end up limiting what we do do.  I hate how hard he finds life at times.  I hate how we as a family are affected and his little brother doesn’t get to do the things he would love to do.  Personally I would love to be able to go away for a night with T and just be able to be us again, but we can’t leave the boys with anyone.  I miss my friends who I never get to really see anymore.  I hate seeing how T gets so frustrated by the fact that he can’t play the sport he would love to because I can’t face him being away every Saturday.  And I hate the feeling of guilt that this gives me, I should be able to manage so he can have a life away from work and the four walls of our house.  I also hate how guilty I feel when I do meet a friend, even if only for an hour, because I end up leaving T to deal with everything.

Its horrid knowing your child could be happier if autism didn’t exist.  But saying all this, we can’t change anything.  There is no cure for autism; just acceptance and awareness.  Something to be honest this world has along way to go but with so many people fighting for better acceptance and awareness things can only get better.  We do manage.  We get up everyday and deal with whatever is thrown at us.  We both drink far to much coffee and wine, but we manage.  We have some amazing friends and family around us that do get it and support us.  However tough things get, we and them, will always be here for C and G so maybe life isn’t so shit.  Seriously tough and heartbreaking at times but we do have some awesome moments that would never happen without autism.

I am never out for people to feel sorry for us, I certainly do not want pity.  All I really ever ask is that people learn a little more about autism and be more accepting of it.  With 1 in every 68 children being autistic, and as these children grow up they will still be autistic; its something we need to embrace and all get our heads round.  As a mummy of a child with autism I am still getting my head around it, I am learning more about it each day; so its not an easy thing to do.  But its not like children and adults with autism aren’t all bloody amazing people; so it really shouldn’t be so hard.  We just need to stop trying to put everyone into the same box, stop trying to bang square pegs into round holes, accept everyone is different and it would really help everybody have a better life, autistic or not!!

Back to School!

It would be a rather large lie if I said that I was not looking forward to the end of the summer holidays and the start of the new school year.  It has been a very long 6 weeks, far too much coffee has been drunk during the day, and almost as much wine drunk in the evening!  Don’t get me wrong we have had exciting, funny, mad and wonderful moments, but we have also had some pretty stressful ones.

As much as I can’t wait for tomorrow, I did spent most of last night lying in bed worrying and I guess tonight will be much the same. I have that delightful feeling of anxiety; a rather massive fear of what is around the corner.  Nowhere near as bad as how I was feeling this time 12 months ago when C was about to start school for the first time.  But still I worry, a lot, about what this school year holds.

It took sometime for C to become settled at school.  It took time for the school to begin to understand him and work out that, yes, he did need a little bit more support than most within the classroom, and even more at playtime.  It took time for C to get his head round what was expected off him.  But we did kind of get there; as much as I could have ever hoped for.

But as the new year looms, I feel we are almost going to have to start this process again.  I know after the summer holidays every child is beginning a new school year, with a new teacher and new classroom but for some children this is a massive ask.  Some days I am completely torn between whether I actually send C to school because I need a break.  Not because school is the right place for him.  Plenty of children on the spectrum are home schooled because school is just to much for them.  Home schooling is something that I will try and avoid as to be truly honest I am not sure I am cut out for having him at home the whole time.  Right now, without question, him being in school is right for us both.  As hard as it is, I hope and pray, that with the right support both from home and school we can ensure that for the time being at least we can continue with what we are doing.

This I think is why I am so nervous.  If we get school right, we will all be fine.  C will survive school and I will manage, although tough at times, to actually enjoy being a mummy, well most of the time at least.  But so much of it comes down to the school.  So far we have been really lucky.  We have had super teachers, the head who is also the SENCO seems very supportive and we have had great TA’s.  But who knows what is around the corner.  Next year he goes from a small class of 15, to a class of 30.  That in itself could cause problems but throw in a new teacher and classroom…  My head and heart are pounding just thinking about it.  I have not met his new teacher yet so although I have been assured that she has talked at length to C’s teacher from last year, I have not been able to say what I think and feel.  I have also never heard anything bad in the playground so maybe I really just need to try and chill out.  But I have become a bit of a control freak, I never used to be one, well, never as bad as I am now.  This is defiantly happened since being a mother of a child with autism.  I have become almost obsessed with knowing what is going to happen so I can help provide as much information to C as possible.  This then in turn helps make my life a little easier as he is less anxious.  I have no idea what will happen tomorrow so I have no idea what to tell him; this mummy might be going into panic mode…..

However much I would like to think I had some say as to what happens at school, really the truth is that I have no control over what happens.  I can say what I think, and hope that they listen and take note.  But at the end of the day, along with every other parent, I have to put my trust in the school and the teachers.  I have to believe that the teachers will do their best for C and not get fed up and cross with him because he needs more of their time and energy than others in his class.  C is never going to be the easiest or simplest child to teach but get it right he might be one of the most rewarding.

I have to keep telling myself that everything will be ok.  I don’t believe it will ever be plain sailing, but as long as the school always tries their best, always keeps the doors open for me to come in (not C otherwise they will lose him), and most importantly remember that they are not just there to teach C how to read and write, but also all the social stuff that most of us take for granted we might just all survive; teachers, C and me.

I have to have faith in C that he will be ok and I have to chill out about school.  So far they have been really supportive.  I have to try and stop predicting what might be around the corner.  I have no idea, so why worry about it.  If I could just make myself take one day at a time.  Deal with one problem at a time and not try and solve problems that haven’t even happened yet, for one I might be a slightly less stressed mummy and secondly I might not need quite so much wine in the evening (haha)!

So here’s to year 1 and hopefully another good year!!

The Never Ending Wait

Finally thanks largely to The National Autistic Society there is a new campaign launched today to try and shorten the long waiting list that people have to endure to get a diagnosis for ASD. This has been far too long coming and can only be a good thing for so many people. I so hope they achieve their goal and so things can begin to get better for so many desperate families.

I think the waiting list is insanely long and I also believe that this is solely down to funding. This is incredibly short sighted of the NHS. Children are suffering without support for far to long. Parents are at breaking point and have nowhere to turn. A diagnosis does not solve the problem, it does not take the issues away. But what it does do, is provide support for everyone. Children need the right support at home and in school. Parents need help. You can be the best parent in the world but sometimes everyone needs a hand. Schools need to put things in place so children can develop, learn and make friends. Schools don’t have the resources to do this without extra money. The money is only available if the child has a diagnosis. Children must not hate school, not be told off for being bad when they are anything but. Families are being left out in the cold, parents feel there is nowhere to turn. Far to many are being told they are bad parents when actually they are struggling to keep their family together, doing all they can to help their child but getting nowhere, all because there is a waiting list that can take years for a child to reach the top of.  If children get the right support early on, it can really help reduce problems later on in life. It won’t solve everything but it can greatly help!

I wasn’t exactly sure if I was going to share our story about the long bumpy road of getting a diagnosis because actually ours is nowhere near as bad as many. But today seems like a good day to do it, if I ever am.

I was at breaking point when C was about 2. I new something was up but not everyone was agreeing. In the end I took myself off to the GP with a list of my concerns about C and myself. She was amazing. Finally someone was agreeing with me and said she would get him referred. Oh but only it was that easy. I had endless paperwork to fill out because a letter from the GP wasn’t good enough. What would a GP know anyway? We had to do a C.A.F (don’t ask, I still have no idea what one it, but it’s very long!) with our Health Visitor. Again she was great and really helped. But what we really wanted was to talk to a paediatrician. Get them to see C and help us have a better idea what was going on.

Twelve months later we finally saw one. Miracles do happen I thought. However after me talking at length to her, she explained the most insane process we now had to go down. We already had reports at this point from nursery, family support workers, and by two Health Visitors. Never mind a referral by our GP. But C was to be added to a new waiting list and once he reached the top of this, a group of people, who I might add will have never met C, will look at the reports and decide what is going on. I think this is wrong in itself, but to be told this when I was hoping that maybe we finally might be getting somewhere is not what I wanted to hear. We were told she would see us again in 4 months. Eight months went by, many phone calls and a pretty desperate letter and we finally saw her again. We are told we are not that much closer to the top of the list. Great, so I take C out of school, to a place he hates, put him in a highly stressful situation to be told that, and then told to come back again in 6 months.

Well by this point, I decide to look into going privately. We are not rolling in cash. I am a full time mummy so we only have one income but this was making me cross. C was suffering, I was struggling, our whole family was suffering. I had once before looked into going privately but decided we just could not afford it. It was going to be well over £1000. But I needed to look again. Work out what we could do. I was being exhausted with the endless battles with the NHS, and felt I wasn’t winning any of them. After talking to people and looking on the internet I came across an amazing lady, who some may have heard off, Dr Judy Eaton. She gave me a price (well under £1000) and after talking it through at home we decided we would go for it. We were incredibly lucky as C has some amazing grandparents who helps us out (a lot) to pay for it. Without them we could not have done it.

For some reason, and one I just can’t guess, Judy was a little busy. So busy that since seeing C she is now doing this full time. This meant we had to wait, I think a whole 8 weeks to see her. She did the assessment with another colleague, following the NICE guidelines, so it is recognised by the NHS.  And two weeks later I had their diagnoses and full report. During the time that we made an appointment with Judy and then saw her, I received another letter from the paediatrician to tell me that C’s case had be reviewed by the board and that he was now on another new waiting list. This list was at least 12 months long and once he had reached the top of this, he would receive a diagnosis. I think easily from start to finish with the NHS in Norfolk we would be looking at a minimum of three years. Just thinking about this makes me so angry. We were incredibly lucky we had the money. But if we didn’t I would hate to think where we would be in another years time. Not in a good place, that is for sure!

Three months on from seeing Judy, we are still waiting to actually get the diagnosis excepted by the NHS but this in theory should not be a problem. The official guidelines were followed, but how things are, with what at times can only be described as backwoods thinks organisation, until I get an actual letter confirming they have excepted it, I am not holding my breath. But the school has excepted the report, and are now beginning to get their heads around how to best support C. I’d lie if I said, as a family we had more support than we did before, because right now we don’t. But my main concern was the school did all they could do, and It does seem that they now are.

I don’t know what I would have done if we couldn’t find the money. This may sound condescending but hand on heart it isn’t meant to. My heart goes out to everyone who has been waiting for years and still isn’t there. C is hard work, some days really hard. We never get a break, and as a family we are all massively affected by autism. But C is not as bad as some children and for families to have to be waiting as long as they are, without support, it’s just wrong.

So I wish The National Autistic Society every ounce of success because by God do people need them to pull off what they are trying to do. And for everyone still waiting, I realise this might sound rich coming from me but don’t give up, people are fighting for you, they really are. You are doing a bloody amazing job and don’t let anyone say otherwise. If you weren’t amazing parents, you wouldn’t care and this whole insane waiting list debacle wouldn’t be affecting you!

The love, hate relationship with assessments

For anyone who has had the joyous delights of having to take their child to a strange place, with strange people, for an assessment, which you know they’ll hate, will understand the complex mix of emotions that an assessment brings.  Many of you will still be eaglely and yet apprehensively waiting to finally reach the top of the dreaded waiting list.  But whether you’ve been there or are still waiting, assessments guarantee to be an emotional ride, for everyone!

Without doubt assessments are heartbreaking, eye-opening and amazing all at the same time.  On one hand you have finally reached, what can only be described as the end of one incredibly long and properly extremely frustrating, stressful journey.  Just to jump on an even bigger and scarier rollercoaster.  But then on the other hand you have finally reached that goal you have been fighting for, for so many years.  You have got your child the assessment they need.  With the hope that you and them will now get the much longed after support you all crave!

As a family we have been down the autistic assessment route and still haven’t quite reached the end of that particular road.  I think as a mother you know when there is something up.  Whatever people say, you know your children and I new from an early age C was a little different (T hates me saying different but I’m never really sure how else to put it). I think C was about 3 when I came to the conclusion that he had Aspergers or HIgh Functioning Autism. So when we got told, I was not surprised.  It didn’t came as a nasty shock.  I did not go and cry, and shout and throw things.  Maybe I should have? I don’t know.  To be honest I just felt that finally my feelings had been proved right. But really, most importantly it has put us in the position, that in theory, we can now access support for him; both at school and home.

Today was an assessment for the sensors; to be more precise Sensory Processing Disorder. I have felt for sometime that this plays a massive role in C’s behaviour and yet SPD is little understood, including by myself.  In Norfolk the NHS doesn’t even provide a service to assess or support children with it.   I find SPD extremely hard to understand.  I accept it, I just haven’t got a clue how to help.  So today, I almost felt excited.  This I realise might sound slightly crazy but this is the report that will make a difference.  If we can try and understand why C throws himself of the sofa 500 times a day, why he cannot sit still for even a minute.  Why he likes me sitting on him.  Why he hates holding hands.  Why even when he’s so cold, he’s gone blue, he doesn’t realise he’s cold.  Why he hates the Hoover quite so much.  If we can just find the answers out for even just some of the many whys we have.  I without question, believe that we can make a big difference to him and to us as a family.  He’s only 5 so right now we need to help him control things.  School needs to help him control things.  But we need to understand how to do this.  School need to understand what a big a deal it is.  Finally, now I feel that we might be getting somewhere.  We might all be getting somewhere!

So maybe this crazy, sleep deprived, coffee drinking mother isn’t so crazy after all….

I do however realise that assessments, reports and diagnoses don’t change things.  They don’t make the problems go away.  They can’t answer all the questions.  But what they do do, is provide a signpost.  A signpost to point you in the right direction.  Every family is on a rollercoaster.  They have their ups and downs.  Some families are just on much bigger rollercoasters than others.  The ride isn’t always smooth but the lower you go, the higher you can also go!

So for everyone out there still waiting for an assessment, don’t give up.  Keep fighting for your child.  It isn’t easy, but keep going.  Our family motto, introduced by my dad many years ago is KBO, Keep Buggering On.   It’s one T and I have now also adopted; KBO.  Because as parents however tough things get, you don’t have a choice but to KBO!!

The Supermarket Shop.

Today my aim was to attempt to go to a supermarket.  This does not sound a big deal but my planning had already started at 8am and I am wasn’t planning on leaving until 11am.

Normally I relay on Mr Tesco arriving at my door with food that I need.  However this week, yet again, I did my order at 11 at night whilst in bed and half asleep.  So Mr Tesco did not bring half of what i needed.  Sadly as he does not actually know what I need each week (even if C is pretty convinced that he just turns up like magic with what he wants), I do actually need to order the correct food; rubbish!  I confess Mr Tesco did come on Saturday morning, I know, I know it is only Tuesday and I still seem to have no food.  I do also have T’s Aunt and Grandad coming to stay for a couple of nights which I had forgotten about so the pressure is also on to cook more than just a bowl of pasta.

So I have no choice but to risk the supermarket.  I would normally never do this with G never-mind both boys together and on my own.  This was not going to be fun.

Task number one and the most important was to check with C.  Everything needs to be run past him before it happens or I might as well just not bother.  I had managed to convince him that it was a good idea, it would not take long and afterwards we could go to McDonald’s for lunch.  Well we would go through the drive through and eat it in the car.  Did you think that I was that stupid or brave to risk walking into McDonalds with two children, at lunchtime in the middle of the school holidays.  Not a chance!!

Task one completed and so the count down begun.  C needs to not only know something is happening but when it is happening.  My house in places looks more like a primary school classroom; timetables, clocks and sand timers among but a few.

I had my shopping list written down on two sheets of paper, one for each of the boys and another one in my phone.  Surely one will survive until we are in the supermarket.  I have both ipads on charge so we have entertainment for the whole 20 minutes in the car to said supermarket and I have the current favorite programmes downloading.

C is now on his 30 minute count down before we need to go and get in the car.  G is dressed, I am dressed, C isn’t but this will be done 2 minutes before we walk out the door or I will have to start all over again.

I have two drinks made for the car (routine, routine, routine).  I have C’s shoes on the stairs, G’s shoes are on, my handbag, shopping lists, ipads and drinks are in the car.  Keys are in my pocket.  We are all set to leave.  I just need to get charlie dressed and into the car.

C will not get dressed.  I firstly put his on his shirt.  Stupid mummy!  He always wants pants on, then shorts, then shirt.  Well that was a bad start.  He then announces he is far too tired to leave the house today and he is not going anywhere.  Well that’s the end of my shopping for the day!  Pasta for tea it is!!

I realise this might sound like him being difficult and me being super soft and to be honest up to a point I think sometimes it is.  But C uses him being tired to control things.  He is not tired, he is anxious about something.

Going to a supermarket is stressful for me, because it is stressful for C.  Its a place where things cannot be controlled.  We all have a fairly good idea what will happen.  We try and park, get cross that someone had parked in the family spaces who certainly doesn’t need the space, we manage to get a trolley which has a wonky wheel.  We manage to get 90% of whats on the list, if we haven’t lost it or a child hasn’t eaten it.  We finally pay, pack and are back in the car.  However for a child with autism a supermarket can be a place of nightmares.

Its full of people.  Its deafening.  It has horrid harsh lighting which hurts your eyes.  Its a place which without doubt results in sensory overload.